LCIS after second surgery

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brocade
brocade Member Posts: 2
edited June 2014 in High Risk for Breast Cancer

Hi,

I have bilateral breast cancer.  I had surgery to remove invasive carcinoma on both sides with lymph node involvement on one side. I had 3 months of chemo and I had a second surgery 2 weeks ago to clean the margins on both sides and remove additional lymph nodes.  The margins were clear and the additional lymph nodes were clear.  But they found LCIS, which I know is pre-cancer.  I know that typically LCIS doesn't mean that one will develop invasive carcinoma, however, given the fact that I already had invasive carcinoma, I'm wondering if that increases my risk.  Does anyone have any info on this?  I will be starting radiation in a week and will be on tamoxifen after that.  Has anyone had a similar diagnosis?  Thank you.

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  • leaf
    leaf Member Posts: 8,188
    edited April 2009

    I have never had invasive; I only have LCIS and ALH.

    The outcome of women who get invasive with and without LCIS is pretty complicated; that's not surprising since the whole outcome of breast cancer is pretty unknown.  To me, it sounds like different studies suggest different things. 

    As always, most of these studies don't have very many subjects.

    RESULTS: Fifty-six patients (9%) had LCIS in association with invasive cancer. On univariate analysis, positive final margin, positive/no reexcision, smaller maximum specimen dimension, and the presence of LCIS predicted for IBTR. The 10-year IBTR rate was 14% for cases with LCIS vs. 7% without LCIS (p=0.04). On multivariate analysis, positive margin (p<0.01), positive/no reexcision (p=0.04), and presence of LCIS (p=0.02) remained independently associated with IBTR; positive margin (p<0.01) and LCIS (p=0.04) were also associated with TR/MM failure. When examining only cases with negative final margins, the presence of LCIS remained associated with higher IBTR and TR/MM rates (p<0.01). CONCLUSION: The presence of LCIS was independently associated with higher rate of IBTR and TR/MM after BCT for invasive breast cancer. LCIS may have significant premalignant potential and progress to an invasive IBTR at the site of index lesion. The adequacy of excision of LCIS associated with invasive carcinoma should be considered in patients undergoing BCT.http://www.ncbi.nlm.nih.gov/pubmed/16965988

    Breast-conserving therapy involving limited surgery and radiation therapy is an appropriate method of treating patients with invasive breast carcinoma with or without associated LCIS. Neither the presence nor the extent of LCIS should influence management decisions regarding patients with invasive breast carcinoma. [See editorial counterpoint and reply to counterpoint on pages 978-81 and 982-3, this issue.] Copyright 2000 American Cancer Society.http://www.ncbi.nlm.nih.gov/pubmed/10699897

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    brocade--- so sorry to hear all that you are dealing with. LCIS is usually an incidental finding as it was in your case.  I would think your risk is increased more than someone without LCIS in the mix, however, they are already treating the invasive bc that you have with the "big guns"--chemo, radiation, tamoxifen----and I'm sure you are very closely monitored, so you are doing all you can at this point. Praying for God's peace for you throughout this journey.

    Anne

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  • sherry64
    sherry64 Member Posts: 184
    edited April 2009

    brocade-I did not have invasive but my original diagnosis was LCIS.  I was then found to have DCIS as well and decided on bilateral mast. Pathology determined I still had LCIS in the margins which means I still have LCIS in the tiny amount of remaining breast tissue.  My surgeon had me see a radiation oncologist who said LCIS didn't require radiation (which I knew already thanks to this site) and my oncologist said the risks of Tamoxifen outweighed the benefits in my case with such little breast tissue.

    For you, I think Tamoxifen and close monitoring make sense for the LCIS, once chemo and radiation are completed for your invasive component.  Sounds like you're doing everything right.  Good luck.

    Sherry

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  • leaf
    leaf Member Posts: 8,188
    edited April 2009

    From what I've read,  after the inital excision, to make sure there isn't something worse than LCIS hanging around, many people feel that it doesn't really matter if LCIS is excised or not.  This is because LCIS is usually not detectable by clinical exam, mammos, or ultrasounds-it is usually found as an incidental finding on biopsy.  They would have a difficult time detecting the often multifocal and bilateral incidence of  LCIS. (They know this because they used to do bilateral mastectomies routinely on LCIS women and could look at the mastectomy specimens.) 

    LCIS seems to put BOTH breasts at risk for breast cancer, at least for women who do not have a personal history of invasive breast cancer.

    "The associated risk for developing invasive breast cancer after a diagnosis of lobular neoplasia is multicentric, bilateral, and equal in both breasts. " http://www.ncbi.nlm.nih.gov/pubmed/16687097

    " LCIS is associated with increased risk of subsequent invasive disease, with equal predisposition in either breast. The minimum risk of developing IBC after LCIS is 7.1% at 10 years."http://www.ncbi.nlm.nih.gov/pubmed/16110014

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  • Kimie4me
    Kimie4me Member Posts: 18
    edited April 2009

    HI Leaf,

    Just diagnosed 10 days ago with LCIS with a 4cm tumor...my genl, surgeon is against a bilateral mastectomy and your research proves why I should go for a bilateral! My PS also was concerned that this surgeon is so conservative. I am going to get a second opinion!

    Thanks! 

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  • leaf
    leaf Member Posts: 8,188
    edited April 2009

    While each surgeon is different (my breast surgeon refuses to do any more surgery on me after my initial excision), most sources I have seen opine that mastectomy is rarely necessary.  I don't know if my insurance would pay for one.

    "Bilateral prophylactic mastectomy is sometimes considered an alternative approach for women at high risk for breast cancer. Many breast surgeons, however, now consider this to be an overly aggressive approach. Axillary lymph node dissection is not necessary in the management of LCIS.  "http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6

    The estimates that I can find opine that lifetime LCIS risk (at least if you are NOT BRCA)  is on the order of 30-40%.  I have been offered risk quotes as low as 10% (by the NCI certified Major Institution) to (by a breast cancer risk calculator that has NOT been compared to populations - so it is only a theoretical model) of 85% (without tamoxifen or other AI). 

    This means that the majority of LCIS women will probably NEVER get BC as a group.

    BPMs are irreversable.  Do your own research before you come to your own conclusions.

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  • Kimie4me
    Kimie4me Member Posts: 18
    edited April 2009

    Thanks for the research info! I just worry b/c I am only 40 and my dr. said I have a 30% chance in the "good" breast plus a 2% increase each year. I hope another 40+ years and if I do the "math" correctly, 2%X40 years =80% and then add the original 30% on top of that and the grand total is a 110% chance of developing it in "good" one. So, why would I want to go through this twice? Why not do both and get it over with? Just my line of thinking...tell me if I am way off on this. I didn't mention that I have lobular carcinoma with focal signets, an invasive form in addl to LCIS.

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  • leaf
    leaf Member Posts: 8,188
    edited April 2009

    I am, of course, not a breast cancer statistician.  But obviously no one can have a 110% chance of having breast cancer.

    The statistics above only apply to LCIS WITHOUT anything worse.  Or it applies to the Gail model, which not only excludes women with ILC, but also excludes women with LCIS.  Probably the Gail model is one of the most popular breast cancer risk models.  If they have a lot of uncertainty about the Gail model, then they have to have a lot more uncertainty about the risk of other groups, I would think.

    I can't find any studies that address the presence of LCIS and ILC.

    I do not know that much about ILC.

    From what I can gather (and I may be wrong) we don't know if LCIS increases the risk of bc beyond that of ILC.   I can't find much about focal signets either.

    But since ILC is known as the 'sneaky one', and the risk of LCIS is bilateral, if I was in your shoes, I'd definitely be thinking about bilateral mastectomies. From what I understand, ILC often does form bilaterally.

    So, no, I don't think you are way off base at all.  I think you are very much on track.

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  • Kimie4me
    Kimie4me Member Posts: 18
    edited May 2009

    Hi Leaf,

    My genl. surgeon said I have a strong case for a bilateral. I am scheduled on May 13th! Very happy about the outcome with my genl. surgeon and ps. Thanks for listening...now I need to find a way to talk to my kids. Obviously they will notice mommy going through physical changes. Not looking forward to that conversation... 

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  • leaf
    leaf Member Posts: 8,188
    edited May 2009

    It sounds like you've been doing a lot of thinking about this.  I'm so glad it sounds like you're getting the support you need.

    I'm sure its not easy to tell kids about changes in mommy.  I think there are several threads about telling kids about cancer - there are some books many recommend.  (The search function doesn't seem to be working at the moment.)

    I think you have a strong case for bilaterals too.  Let us know how it goes, OK?

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